‘It's especially good just to know that you're not the only one’: a qualitative study exploring experiences with online peer support programmes for the Fragile X community

Abstract

Background

Accessing peer support can be difficult for people with, or carers of people with, inherited intellectual disabilities. One way to improve access is to provide services online, yet few studies have explored people's experiences with online peer support programmes. We aimed to explore experiences with such programmes for communities affected by fragile X-associated conditions.

Methods

Qualitative study involving individual semi-structured interviews with 16 people with, or carers of people with, a fragile X-associated condition (n = 4 adult premutation carriers; n = 12 parents/carers of children/adults), who participated in at least one of three online peer support programmes: educational webinars, Facebook discussion group and small peer group sessions via Zoom. Reflexive thematic analysis was used to develop themes.

Results

Three overarching themes relating to experiences were as follows: (1) uncertainty and value of shared experiences, (2) support navigating healthcare, (3) advantages being online, but still a place for in-person events. Educational webinars were perceived to be a valuable source of information about fragile X-associated conditions although people had variable information needs. Facebook discussion groups enabled people to connect with others, although participants expressed some competing preferences for how the groups were organised. Zoom peer group sessions were perceived to help participants feel supported by others, but that consistency in organisation was important.

Conclusions

Online peer support programmes were perceived to be beneficial, bridging informational gaps and facilitating social connection. However, participants believed there was still a place for in-person events, some felt educational webinars did not always meet their needs and some had privacy concerns.